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View Full Version : Does this ever end? Newly diagnosed


alasker
11-29-2007, 09:35 PM
I'm Alissa. I'm 19, and a student at Portland State. When I was about 16, I started having symptoms of overactive bladder, went to a urologist, and went on Detrol. My symptoms went away within 6 months, and stayed away after I went off of the medication. This year they came back in full force. I never remember having to go to the bathroom often before this year (except for those few months when I was 16), and I remember being able to drive a few hours to the beach without stopping for the restroom.

Within a couple of months, I couldn't go more than an hour without going to the bathroom. I went to a doctor (a primary), and she did the whole UA and put me on antibiotics the same day because she was sure that was the cause. Well, I went back the next week, with no change in my symptoms, and she told me that the results were negative; I hadn't had an infection. Then, as if she didn't believe me, she told me some story about how if I kept complaining of having to pee all the time, she would have to stick a catheter in me and re-train my bladder--I got the vibe that she didn't believe me at all, and that she was just telling me all of this to scare me off. It worked; at the time, the thought of needing a catheter scared me to death, and I was willing to continue going to the bathroom every 30-60 minutes to avoid it. (It didn't help that she marked me down as a "slasher" upon my initial exam, because of the scars on my arms from when I was younger; I guess I lost all credibility as a patient as soon as she saw my arms.) Of course the symptoms didn't go away, and only got worse.

I finally got up the courage to face another doctor, and he actually believed me. He thought it was OAB, and put me on Detrol for six weeks. This time it didn't help. He looked offended that it didn't work, but put me on Ditropan. Within 4 days of being on Ditropan, I had the worst experience (up until that point, of course)--I couldn't pee! I kept trying for about 2 hours, then hysterically asked my mom to take me to the ER. I was in tears when we got there, and the 4 hour wait to be seen (and to get relief) drove me crazy. By the time they took me back, I was begging for a catheter--It's amazing how our prospective changes when we're desperate; what I once avoided at all costs, I was now begging for. It had been 6 AGONIZING hours, but with the Foley in, I felt amazing (even the initial pain of sticking it in paled in comparison to the feeling of retention). I was devastated when I found out I had to go home with a leg bag, though; I'm 19, and I have to carry around a bag with pee? It may sound vain, but I was humiliated over the entire experience; I felt like an invalid.

My doctor passed my case on to a urologist after the incident, and I saw him for the first time the next morning, to take out the Foley. I was praying that when they took it out, I'd be able to pee, and I was! It was one of the happiest moments of my life. He taught me how to self-cath, and gave me one of my very own... He sent me home with more Detrol to try, only a higher dose; it caused retention and left me self-cathing. I went back, and we did the whole urodynamics test where he filled my bladder and measured how it worked (very uncomfortable, left me crying and begging them to stop), and put a camera up into my bladder to look around. We found out that my bladder only holds about 200cc, and started looking over our options. We scheduled the hydrodistention procedure and biopsy, and tried a patch with similar medication as the Detrol in the meantime. The patch didn't work, and I had the surgery two days before Thanksgiving (about a week ago).

I had no idea the surgery would knock me out as much as it did. I woke up needing to pee badly, but they wouldn't let me for a half an hour. Then they released the stopper on the cath, and all was well for about two minutes. After that, and for about another hour, I felt like I had to go but couldn't. They did a bladder scan to see if I really had anything in there, and I was pretty full. I guess the one thing they didn't tell me was that the surgery and the anesthesia could both cause retention. I can't believe it came to this, but I actually suggested and asked for a Foley, and it might have been the drugs, but I didn't even care that my boyfriend was there and got to see the bag (the first time around, I was so humiliated that I didn't even tell him until weeks later). This time, they showed me how to remove the Foley on my own, and I did so the next morning, but afterwards I was unable to go on my own. For the next three days, I was left self-cathing around 10 times a day--the feeling that I had to go was strong and constant, and it was pretty frustrating to have to catheterize myself so many times.

One week after all that, the frequency is the same as always, if not worse; I started feeling pain on top of that (in the past it was always just frequency and pressure), so I think I might have gotten an infection from all the times I had to self-cath. The doctor gave me Bactim, but if left me so sick that I couldn't get out of bed without vomiting, so he stopped all medications. I see him again on the 14th to discuss further treatment.

It's been almost a year of living like this; I've gotten used to being controlled by my bladder, but it's so frustrating and depressing. I can't go anywhere without worrying about being within 10 minutes of a bathroom; driving is hard, especially when there is traffic, and I've stopped at gas stations before and either been denied access to a restroom, or been tricked--this one jerk told me the restroom was outside, so I walked outside, and guess what I found: a wall. It was humiliating. I get agitated and stressed out when I'm driving or walking and can't find a restroom, mostly because I'm uncomfortable and scared to death of having an accident. I can hardly attend class because of how often I need to use the bathroom, let alone actually work. I feel so embarrassed and ashamed that I need to go so much, and I feel so limited because of it. I'm scared that it'll always be like this. Writing this, I find it depressing how much of my life revolves around my bladder. Most of my thoughts revolve around my next trip to the bathroom, and I have to plan my day around where I'll be able to use the restroom. But you know what? I miss the little things the most: being able to sit by the waterfront and read a book or have a picnic, or being able to drive up to Rocky Butte (a really beautiful hill that looks out over the city), without worrying about the nearest bathroom. I look forward to getting my life back, but I'm scared I never will...

sweettabby
11-29-2007, 09:48 PM
Gee it is too soon to give up. Ask your urologist to start you on treatment for IC. There are so many meds out there to try. Do not give up.:angel:

leelee88
11-30-2007, 03:59 AM
sweettabby, is right there is so many meds out there that can help you be able to live a more normal life.

Also the IC diet can help you to. Heres the link to the Patient Handbook
http://www.ic-network.com/handbook/

The medicnes like Detrol, and Ditrapan can cause some people alot of retention. I found it made things worse for my IC, so I stopped trying OAB meds. But everyone is differant.

I would research the meds everyone is on and ask questions and learn as much as you can and take that Knowledge back to your doctor and tell him what you want to try, thats what I did and if he want listen go to another dr and keep doing this until you find one who will listen to you and treat you for this, because I promise you, There is life with IC.

Claredale
11-30-2007, 04:19 AM
Alasker, I am so sorry you have gone through all this. Please know that we all know what you are going through and while it can be a rollercoaster of a ride with IC, working closely with your doctor that is an IC specialist and finding out what your triggers are will gain you a better quality of life. We are all on different time schedules as far as finding what works, but it is so worth gaining all the knowledge you can.

Ronda is so right. Do alot of research and discuss it with your doctor.

Tracey

sickofmybladder
11-30-2007, 07:45 AM
I'm very sorry you've had such a hard time - if it makes you feel better - I'm 35 and initially alot of doctors did not take me seriously either - I think sometimes egos get in the way (if they can't find it - then there is nothing wrong).

Now - try your best to not be discouraged - it is far too early to believe you won't get better - it sounds like you need to discuss I.C. meds with your doctor - go to the patient handbook and you will see a list of medications that are commonly used - also try the diet - if you are diet sensitive (which alot of us are) then that may make you feel better also.

Lastly - if you look around the board - you will see that there are quite a few younger adults on here - so don't feel alone -

This board helped me more than anything else - I learned so much information that I was able to take back to my doctor - please let us know how you are doing.

:welcome:

SharonA
11-30-2007, 08:49 AM
Just joining in to say hello and :welcome: to the ICN, Alasker. Don't give up on yourself. You have too much to offer to do that. :)

karen10
11-30-2007, 10:33 AM
I agree with everyone else! Just don't give up hope, there are still many things to try! My advice, just take some time to relax, try to be really strict with the diet, do lots of research, read old and new posts here--you learn so much, and something one person says might be the very thing that helps you! Bring the info back to your doctor and discuss what you've learned with him/her. Stay positive above all! I hope you feel better soon! :smile tee

BAM23
12-02-2007, 02:00 PM
I agree with all of the above, and i would def. check out different med options. I am 24 and I know how it feels to let your bladder rule your life, I thought mine was over but once we figured out the problem and started treatment I am 100% better for the most part. Keep trying!!!

my3boysmcr
12-02-2007, 02:57 PM
Sorry that you are so miserable. I was in your shoes not too long ago. I had a cysto/biopsy back in June that left me running to the bathroom some 50+ times during the day and a 10-20 times at night. The urogyn's office kept telling me that this si not uncommon after this procedure. I suffered like that for almost 2 months before she finally called in a prescription for Vesicare. I took it for aobut a montha nd it helped get things back under control. She prescribed Detrol more recently and that made me miserable. I had mild retention and stopped right away. I think I took 3 doses..... Anyway, I have 3 kids and they had a harder time with all of this than I did. They spent their summer sitting in waiting rooms and such instead of taking our usual beach vacation, trips to the pool, etc. My bladder ruined our summer. But, thanks to a couple of ladies here, I found a wonderful doctor who is listening to me and coordinating a treatment plan that seems like it will work. In July, I was sure htat I would never get better. Now I am sure that things will improve. That is all I want now. Try to be patient. Learn all that you can. Speak up. Don't be afraid to ask questions or even find another doctor. Good luck!

alasker
12-03-2007, 05:02 PM
Thank you guys, it's really nice to know that I'm not alone in this :)

lisabar36
12-04-2007, 06:17 AM
Hi, don't give up! I had my first hydro, cysto when I was 29, I woke up with a full bladder and major pain, I had a foley catheter for 3 days following that. It can be humiliating, but always look to the positive side, there is treatment to help you to feel better and your not alone! Hope you start to feel better.